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Comment by BBQueen on March 31, 2016 at 6:55pm

You said the most wonderful thing "I am getting some new hair growth" And from what I recall you have not been on Finasteride that long. Wouldn't that be the best thing ever!! I will send you a message now...

Comment by sallylwess on March 31, 2016 at 3:44pm

Dear Kathyt, I am so sorry to hear of you diagnosis.  It breaks my heart whenever I read of newly diagnosed women.  This disease is devastating for so many reasons.  We suffer such a sense of loss.  Our identities are wrapped up in our hair more than any of us realize until suddenly our hair begins to go.  For me, it caused me to have some pretty significant depression.  I told my friends, my family, and I bravely tried to move forward hoping against hope that the loss would not become as extreme as it was in other photos of others with FFA that populate the internet.  Sadly, my hair loss did become extreme.  I have lost a great deal of hair in the frontal areas and on top of my head.  I no longer in able to hide the condition with hair styles or even headbands.  I now must wear a topper whenever I go out if I wish to look as if I am not half bald.

I have written before that the fear of how much I would lose was worse than when I finally lost the hair.  Somehow, I accepted it more once the hair was gone than when I was worrying about it.  

At first, I was told nothing could be done.  I have had kenalog injections.  I think they may have slowed down the progress, but they did not stop the loss.  I then became allergic to shots.  I tried clobetasol.  It only relieved symptoms.  Then, I became allergic to the clobetasol.  I am now taking finasteride.  I think it is slowing down the loss, and I am actually thinking I am getting some new hair growth.  Time will tell.

I spent an inordinate amount of time and money on wigs and hair pieces, most of which never worked well for me.  I finally spent a large amount of money to have a topper made specifically for me. It isn't perfect, and I will tweak its design better if I have another one made.  I have/had silver gray curly hair.  That is a hard one for wig designers to match.  

Quite honestly, if I had it all to do over again, I would never have bought a wig or topper in desperation.  I did a lot of research before I purchased my wigs, but I found I still was naive and did not make good choice.  I would have saved my money, not bought wigs, and flown to LA for the interlace system.  I think that is the best solution.  I know it is pricey, but I have spent as much on wigs that didn't work as I would have for a system. 

Know you are not alone.  There are more of us out there with this than you might imagine.  I hope I have been a bit of support for you.  As always, I pray for and hope for the day when we see a cure for this and have an understanding of what causes it.  My best to you, Kathyt.  

BBQueen, I am interested in the restoration place in SLC.  I will be there in May.  Can you privately send me information on it?  Thanks.  

Comment by BBQueen on March 31, 2016 at 12:15pm

I went to a hair restoration place in Salt Lake City. There are a ton of them. They do alot of hair pieces for men. Mine clips in and tapes along the hairline. The hard part is getting the color to match. I have long curly hair so that is also hard to match. I can not use the intergrated systems because its too hard to pull my long natural curly hair through it. This place ordered a front lace hair piece and cut it to size. Then cut in bangs and added clips. It was $500. Also,I had them color the roots so it looks less wiggy. I still feel like a prisoner with it but its what I have for now. Ive also thought of finding a wig that matches my hair and cutting it myself. Its easy to sew the clips on. Just look on youtube. God, please let us get a hair transplant one day!!!!

Comment by CarolJ on March 31, 2016 at 11:34am

I have heard that Lynn and Kristin Duncan do great eyebrow tatooing. Www.worldclasspermanentmakeup.com I live in Wisconsin close to where their office is here and it looks like they have an office close to Chicago also.
I have not had my eyebrows done but am seriously thinking about it this summer also!

Comment by MnM on March 31, 2016 at 10:06am

Sad in Chicago, I went to World Hair Institute in downtown Chicago for a consultation, they offer a system similar to Lucinda Ellery's. I can still hide my loss, but it was great to know I have an option when I can't. They spent over an hour with me, which was great. I'm only 33, so I know I've got a long road ahead of me with this.

If anyone has recommendations for permenant make up in Chicgoland please let me know. I'm looking to have my eyebrows done this summer.

Comment by Sad in chicago on March 31, 2016 at 8:49am

I was happy to learn I
Of your success with Lucinda Ellery. I presently wear a topper and it clips in, looks ok, but would prefer a system such as yours. I contacted them to see if they could recommend someone in the Chicago area as I could not afford the upkeep along with travel to LA or NY. Alas they will not make any recommendations or referrals. Bummer. Does anyone know of a reputable alternative in the Midwet? I have researched but can't find anyone. Thanks

Comment by DeniseC on March 31, 2016 at 3:53am

I am so very sorry to read how you are both suffering. I went through almost exactly what you write - was told it was my age (I am now 65, was around 60 then) that was causing the problem and that nothing could be done. So I did exactly that - nothing. Other than lie awake at night feeling terrible. I couldn't even tell anyone - I tried to hide it, as if I had done something to be ashamed of.

But eventually I had to admit it. We were on a walk on a windy day and my six-year old grandson commented 'Nanna is going bald!'. Argh. It was truly horrible, yet I really do not know why. I am a strong woman who has never believed people (especially females) should be judged by their looks. I am not vain, and as healthy as can be. So why does it have such a profound impact on the way I see myself? Yet it does.

I spent an inordinate amount of time worrying. The loss, like BBQueen, was about two inches all round, perhaps more on the top. However, my hair at the top and back is still thick, so I was constantly pulling it forward - hairspray entered my life with a vengeance! And I loathed photographs, special occasions, windy days.

Then, about two months ago, I decided I had had enough. I had, like most people on this forum, spent hours upon hours researching online what to do (and remember, I had no idea until that point that there were meds that were being tried - I had been so dismissed as 'old' by my GP it completely stuck - more fool me).

So three weeks ago I bit the bullet and went to the Lucinda Ellory hairloss clinic for women (in London, but in the US too). And now I am the proud owner of an Intralace system - it's a prosthesis that is attached by a sort of fine webbing to  your scalp by way of your own hair and tape. So now I have 'my' hair back. Better than a wig for me, as I do not have to worry about it coming off, I can swim in it, do anything in it, and to all intents and purposes it is mine. It's coloured and styled to match my hair exactly, and no one (other than those I have chosen to tell) notices. Lots of questions about whether I have coloured my hair, or had it re-styled, but nothing about 'what's that on your head'?! Not cheap, but highly recommended and the best solution I can find for me.

And there will be a solution for you. Alongside the regaining of hair and of 'me' that the Intralace has given me, perhaps the most profound change is the normalising of my condition. It is not something to be ashamed of. It is just bad luck. Going to the clinic and seeing loads of other women in worse positions than me, and talking about it with people who knew what I felt just helped give me my perspective back. I have FFA, but I am damned if I am going to allow myself to be defined by it for the rest of my days.

To you both - I truly feel for you. I know what it feels like and it is horrible. As has already been said, use this forum. It helps to 'speak' to people who do know what it is like. And try, try, try, not to do what I did and just accept there is nothing that can be done, even if the solution is, like mine, an artificial one. I don't care - it works for me!

Love

x

Comment by Brenda, IL US on March 30, 2016 at 11:43pm

Kathyt I'm sorry to hear about your diagnosis.  It is a shock when we hear that our hair won't be growing back.  I got eyebrows tattooed a couple of years ago and that definitely gave my self esteem a much needed boost.  I'm glad you have a good dermatologist now.  The injections are helping to slow my hair loss but they're not stopping it yet. I wish you luck.  

Comment by BBQueen on March 30, 2016 at 10:30pm

Kathyt-I too am beyond devastated! I just cant believe it! Im only 39 and I dont know how Im going to face my future. Do you have any thoughts on what may have caused this for you? Im thinking mine started from lots of stress and getting off birth control. It started in 2011 and I cant believe it hasnt stopped. This is aweful. I sometimes wish all my hair would fall out so I could get a wig and move on with life. But how do I save all my thick long hair because of two inches missing around my face. Its such a shame. Ive watched every youtube video on wigs. There are alot of strong and brave girls out there... I wake up every morning hoping this was just a nightmare. I have ordered about 20 hats and I hate wearing them. I ordered some yoga tapes to try to help me. I need something cuz Im on my way to a breakdown. Guess Ive got to learn to except this....

Comment by Wyobalance on March 30, 2016 at 7:49pm

If you haven't, I recommend starting with contacting Carf (Cicatricial Alopecia Research Foundation) www.carfintl.org.  It sounds like you've got a good doc that is knowledgeable about this.  Scarring/FFA is very hard to accept and deal with.  We have all been there!  (And still are now and then).  I'm so sorry you are having a hard time right now.  If it's comforting at all, there are a lot of us out there and we understand.

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